Communication Supports for Persons with ith Dementia
Melanie Fried-Oken, Ph.D., CCC/Sp Oregon g Health & Science University y Director, Assistive Technology Associate Professor, Neurology, Biomedical Engineering & ENT
REKNEW-AD team: (Reclaiming Expressive Knowledge in Elders with Alzheimer’s Disease)
Fried-Oken, Ph.D
¾Charity Rowland, Ph.D., co-P.I. ¾ Glory Gl Baker, B k Research R hC Coordinator di t ¾ Jeon Small, ABD, Research Associate ¾ Barry Oken, M.D., Neurologist ¾ Darlene Shultz, Research Assistant ¾ Carolyn Mills, Research Assistant ¾ Janice Staehely, Research Assistant
Goals for today’s presentation
• Gain familiarity with AAC (augmentative and alternative communication); • Understand the issues around AAC and dementia; • Learn about current research being conducted on AAC and adults with moderate Alzheimer’s disease.
What is AAC?
Augmentative A t ti and d Alt Alternative ti Communication refers to anyy strategy, technique or tool that enhances replaces enhances, replaces, augments or supplements an individual’s communication capabilities.
Augmentative Communication Approaches
• • • • • •
Speech Vocalization Gestures Eye gaze Body language Sign language
• Paper and pencil • Communication books • Communication boards and cards • Talking toys • Speaking computers • Talking typewriters • Voice output communication aids
Who is an AAC User?
Anyone whose A h communication i ti iis adversely d l affected by an impairment in speech, language cognition language, cognition, and/or physical abilities.
Communication impairments leading to AAC use
• Physical impairments – ALS (Lou Gehrig’s Disease) – Cerebral Palsy – Spinal Cord Injury – Parkinson’s Disease – Multiple Sclerosis
• Cognitive C impairments – Traumatic brain injury – Mental retardation
• Language Impairment – Aphasia from a stroke – Autism
• Sensory y Impairment p – Blindness – Deafness
Fried-Oken, Ph D
AAC User Profiles • The father with ALS who chooses to use a ventilator and be part of his family as his girls grow up. • The person with ALS who chooses to work from home. • The woman with Parkinson’s Parkinson s Disease in a nursing home near her grandkids. Fried-Oken, Ph D
• Th The man with ith aphasia h i att h home with ith hi his elderly wife. • The Th young man with ith a closed l d head h d injury at a SNF. • The Th d daughter ht with ith a ffastt growing i glioblastoma. • The Th preacher h with ith olivo-pontoli t cerebellar degeneration (OPCD).
Individuals with dementia, dementia traditionally, have not been listed as a clinical group that has benefited g from AAC.
Premise of pairing AAC and dementia
• Pairing the external aid with familiar and spared skills (such as page turning, reading aloud) should maximize a person’s person s opportunity for success. • These skills are based on intact procedural memory. memory • The stimuli are relevant to a person’s person s ADLs ADLs.
So, what AAC strategies and aids should we consider for adults with dementia?
Electronic Devices
• Speech generating de devices ices – Synthesized speech output – Digitized speech output
• Computers (Handheld, wearable, or desktop) – Dedicated versus integrated devices – Software purposes: • Schedules • Reminders • Augmented input or output
AbleLink bl i k Handheld Visual Compass AbleLink WebTrak ERI Pi t Picture Planner
External memory aids:
• • • • • • • • •
Notebooks, N t b k cards, communication boards, boards calendars, signs signs, timers, labels labels, color codes, tangible visual symbols)
Bourgeois research (1991-1994)
• Made individualized memory wallets or cards • Persons with mild AD • Measured outcomes of conversations between trained caregivers (spouse, adult child, day staff) • Wallets: Pictures and words for 3 topics: – Family names – Biographical Bi hi l iinformation f ti – Daily schedules.
Results
• Increased the frequency of factual information; • Decreased the rate of ambiguous, perseverative, ti erroneous, or unintelligible i t lli ibl utterances; • Increased the conversational responsibility (turn taking) of person with dementia; • Increased the number of on on-topic topic statements during a conversation.
Now we know that non-electronic AAC options ti work. k How H can we examine i these th approaches further?
3 things to consider for each aid:
1. The messages or language in the aid; 2. How those messages g are presented; 3. The output, or result, of selecting a message from the aid.
What messages should be chosen?
• Autobiographical memories might be accessible. • Messages that affect the environment might be more meaningful. • Message topics have been documented within the language of elders.
Some elder speak topics Svoboda, E. (2001). Autobiographical interview: Age-related differences in episodic retrieval. Department of Psychology. Toronto, University of Toronto: 107.
Emotional • Losing something important • Being embarrassed • A argumentt An • Pet dying • Being discipline at school • Being lost • Meeting a special friend • Being chosen • Wearing a special piece of clothing • Holiday
Family Events Famil E ents • Birth of sibling • Someone’s death Child’ fi Child’s firstt d day off school h l • • First house • Moving to new home • Moving to new school • First love • Wedding • Engage • First dance • First child
Levels of representation Concept of “apple” apple Auditory-verbal WORD: say “APPLE”
Visual-verbal Visual verbal Symbol: write APPLE
The tatile symbol (The tactile Obj off Object APPLE) APPLE
The visual symbol: Bl k & white Black hit picture i t Colored drawing photograph photo
Symbol: visual or auditory representation for a referent
• Color • Size • Level of representation – Iconicity: Ease of symbol recognition • Transparent symbols- visually resemble their referents. • Opaque symbols- visual relationship to referent is not obvious. DUCK Fried-Oken, Ph D
What will be the result of symbol selection?
• Communication partner validates message. • Electronic voice output that labels the symbol. symbol
Neither input mode (symbols) nor p mode ((+/- p presence of voice output output) has been experimentally controlled in research on AAC devices to enhance communication for adults with AD. AD
Current funded research question:
• Do AAC tools improve the quantity or quality of conversation by individuals with moderate Alzheimer’s disease?
Specific Aims
• 1. To compare p the effects of different input modes in an AAC device on conversational skills of persons with moderate AD. – Print alone – Print + photographs – Print + 3-dimensional miniature objects – Photographs Ph t h alone l – 3-dimensional miniature objects alone – Control condition (no board) board).
• 2 2. To compare the effects of output mode in an AAC device on the conversational skills of persons with moderate AD. – Digitized speech output – No N speech h output t t
3. To determine whether the effectiveness of input modes on the AAC device varies i with ith severity it off llanguage impairment of persons with moderate AD. AD – Top half scorers on the Functional Linguistic Communication Inventory (FLCI) – Bottom-half scorers on the Functional Linguistic Communication Inventory (FLCI)
4. To determine whether the effectiveness of output modes on the AAC device varies i with ith severity it off llanguage impairment of persons with moderate AD. AD – Top half scorers on the Functional Communication Inventory (FLCI) – Bottom-half scorers on the Functional Linguistic Communication Inventory (FLCI)
Social Validation Aim:
5. To determine whether the effects of using an AAC device is viewed as successful by conversational partners. 6. To determine if the language symbols for each aid is translucent and represents the user’s concepts.
Design for participants/board conditions
Input/ Output
Print Print + only l 2D 2-D symbols
Print + 2-D 3D 3-D symbols b l symbols only
3-D symbols b l only
Voice output
6
6
6
6
6
No Voice Output
6
6
6
6
6
12
12
12
Totals
No B Boar d
60
12 12
Questions you should be asking by now:
• What do these AAC devices look like? • What do they y sound like? • What are the different input modes (symbols?) • How does a participant use the device?
Flexiboard with 2-D symbols
Flexiboard with 3-D symbols
Fried-Oken, Ph D
Subject’s conversation
Subject Criteria
• Diagnosis of probable or possible AD by a board certified neurologist; • Clinical Cli i l D Dementia ti R Rating ti (CDR) = 1 or 2 2; • Mini Mental Status Examination (MMSE) = 5-18 within 6 months of enrollment in study (or we administer); • Vision and hearing within functional limits; • English as primary language.
Exclusion criteria
History of other neurologic or psychiatric illness (no CVA, reported alcohol abuse, traumatic brain damage, reported recent significant psychological or speech/language disorder).
Fried-Oken, Ph D
Subjects to date (4/2006)
Subject
N=20
(4 withdrew)
Gender
6 Males
14 Females
Age
Mean – 75.7 yrs
Range – 50 – 91 yrs.
MMSE
Mean10.65
Range5 – 17
CDR
Mean1.7
Range1-2
FLCI
Mean50.35
Rangeg 27 –80
11- Hi L function
9- Lo L function
Method
1. 2. 3.
Identify participant and randomly assign to condition; Determine participant’s preferred topic and vocabulary; Develop communication device with randomly assigned symbols (+/-voice output); 4. Conduct 10 videotaped conversations: a)) 5 conversations ti with ith assigned i db board; d b) 5 conversations with no board (control); 5. Collect caregiver surveys on translucency of symbols. 6. Collect caregiver surveys on success of each conversation.
11 Conversation Conditions (5 conversations each for an experimental & control conditions)
Control (No board) 2-D symbol + digitized speech output - voice output
3-D symbol + digitized di iti d voice i output t t – voice output
3-D 3 D + print
2-D symbol + print
+ digitized voice output – digitized voice output
+ digitized di iti d voice i output t t - voice output
Print + digitized voice output – voice i output t t
Outcome Measures
• The utterance is the unit of measurement
Outcome Measures
Outcome Measures
Results from first subject
Number of utterances/condition
1400 1200 1000 800 Presence Absence
600 400
+print
-print
+voice
-voice
200 0 Print
Voice
Number of utterances/condition Percent Percent productive nonproductiv utterances e utterances
P i t conditions Print diti
26%
74%
No print conditions
22%
78%
Voice output conditions
6%
94%
No voice output conditions
26%
74%
Acknowledgements
• L Layton t Center C t for f Aging A i and d Alzheimer’s Al h i ’ Disease Research, Portland, Oregon, USA • NIH/NICHD/NCMRR award #1 R21 HD47754 01A1 HD47754-01A1 • DOE/NIDRR award #H133G040176
